Introducing Alopecia Alicia

My name is Alicia, and I was born with Alopecia!

I genetically inherited Alopecia, from my father, who inherited Alopecia from his mother, my nana.  Alopecia is an umbrella term used for many types of hair loss, where hair loss is excessive or abnormal. Alopecia is generally incurable (I hate that word), but may go away on its own. In my case, it is not going anywhere, although I wish it would! I am finally beginning my road to acceptance and taking you all with me. Along the way I will share the many worldly solutions I have found through my experiences, some of which will hopefully help you or your loved ones.  

Alopecia varies, impacting the beholder differently, for example, Alopecia Universalis results in complete hair loss on the body, whereas Alopecia Totalis is the loss of all hair on the scalp, and Alopecia Areata is hair loss in patches. In my case I have extremely fine, tiny, short hairs that for the life of me will not grow long. Before I got my eyeliner tattooed no one would believe that I had eyelashes and I barely had eyebrows until I was 22 when I got them microbladed.  However, there are some positives such as never having to shave my arm pits.

Alopecia is not life threatening (for which I am very grateful), however, the pressures of an image orientated society can make it psychologically devastating for those affected, their families, and their friends. 

In 2014, a local New Zealand TV station aired an episode on Alopecia. I was travelling for work at the time, so was alone in my hotel room. The TV show followed some teenage twins, both of whom were recently diagnosed with Alopecia. I sat there, alone, trembling, tears gushing down my face, and unable to remove my attention from the screen.   The episode went on and on about how Alopecia is incurable. The one thing I never wanted to hear. Even at 24 I was optimistic that one day, maybe, I would have my own perfect hair. I would be normal. I was in awe, one of the newly diagnosed twins was really owning it. She was raving about how good it felt to swim, to climb, to do anything, with utter freedom from hair. How could she have such confidence and bravery, and accept her condition so quickly?! I was envious, she was but a teenager going to high school and an adult, with 24 years to learn to love the hair I had, and was crying alone in a hotel room feel sorry for myself. 

My silver lining from the episode was that I was not alone in the world. I was not the only person with Alopecia and different looking hair. I know that sounds Naïve, but it’s how I felt. My dad and my brother also have Alopecia, both of whom owned it, but with costs. My brother was bullied a lot for it. I did not have the confidence to own it like my dad and my brother did. I’m a girl and popular culture has dictated that girls are supposed to have long hair. Before I hit puberty and when I did not have some type of solution, I would regularly be referred to as a boy. Let me tell you, no young girl wants to be repeatedly called a boy. I was the only girl I knew that had permanently short very different looking hair and had limited solutions at the time.

I don’t think Alopecia or any other hair imperfection is incurable- It’s like what Nelson Mandela said, “it seems impossible until it is done”. We just haven’t found the right cure yet. 

My dream is to look just like Blake Lively exiting the water. Her hair naturally slicked back, sexy, confident, water gleaming in the sunlight. This is one dream I am yet to accomplish.  I am a water baby, and love anything on, in, or around the water.  Alopecia is something I have tried to hide for as long as I can remember and as a result there have been many opportunities, particularly involving water, where I have not “lived life to the fullest” and enjoyed the water as much as I wanted to. During swim class at primary school, I would compete wearing my denim blue sunhat and would refuse to dive for the risk of it coming off. This became such an issue, my teacher offered me $50.00 (an equivalent to thousands for a primary school student) just to take my hat off for one minute.  I refused. When I did sail Croatia I avoided getting my hair wet as much as possible. If I did, I always swam with a hat or headband on, and it would cost me hours later, as I would have to sit combing out the lobster dreads my extensions formed, and occasionally comments from other passengers. I never jumped off the side of the boat because of my “imperfect” hair and the fear of being ridiculed.

My love for water has also lead to some pretty hilarious and character building situations. I started wearing my first wigs in my early twenties…… I was not prepared for the learnings that came with them. One evening, while intoxicated at the beach with friends, I thought it was a great idea to jump around in the waves. Somehow in the slur of laughter and white wash my short bob of a wig popped of my head into the water. I quickly grabbed it popping it back on my head. My friends are great, and while no doubt a little shocked, laughed with me and steadied my walk back to shore. On shore I felt my wig, which had now formed a very crisp roster like mullet meets mohawk, straight out of the 80’s. It was my first time getting my wig wet, and since it was synthetic hair I just assumed it was like a barbies hair, which after a few washes would stick straight up. My wig was so stiff it literally stuck out over my forehead like a sun hat. We were having such a good time, there was no way I was letting my new found hairdo ruin my night, and my friends wouldn’t either. The next morning, I walked 30 minutes with that same hairdo (this time with a scarf trying to flatten it) back through the city to find my car. At which point I focused on my reflection for the first time. OMG. Horrendous. #myfriendsmustlovemetobeseenwiththat. It turns out that I put my wig on backwards. The back of the wig is intentionally more firm, to sit against my neck and this was the part I was wearing like a sunhat all night.

 

Alopecia is not the only imperfection under pressure in an image orientated society. We all have varying degrees of imperfections which impact our confidence and which can be hard to overcome. My friends and family are amazing and have always made me feel stronger and stood by me during all of my heart wrenching and embarrassing moments. I encourage you to do the same for your friends and family, helping them feel stronger to overcome whatever is holding them back, and hopefully they will do the same for you. We can overcome our imperfections and be stronger together.

I have finally found the guts to not only share the solutions I have found over the years, but also to share my experiences. Whether your imperfection is Alopecia, or one of the billion other “imperfections”, I may have the solution for you.

I have travelled the world and come across so many hair related imperfections and had the opportunity to gain firsthand knowledge of the solutions to overcome them exceeding the use of hats or pastels (a story for another day). What solutions have you come across or tried?

xox

Alicia

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